Discussions By Condition: I cannot get a diagnosis.

I feel like I am dying....please help!!

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: tbrauer25
  • May 14, 2008
  • 07:18 PM

Hi I am a 30yr old female 5'11 158lbs. I was diagnosed with PCOD 6 years ago and Primary Fibromyalgia 3 years ago. I was also told I was anemic and put on iron therapy 2 times a day. I am also a type 2 diabetic.
I have never believed that Fibromyalgia is what I have so please keep that in mind. I suffer from EXTREME fatigue(to the point getting out of bed is a challenge),bowel problems(pick a day sometimes constipated or diarrhea), Muscle and joint pain, Muscle spasms in feet, legs, hands, & arms(VERY PAINFUL!), constant headache, extremely dry mouth, dry eyes, dry skin(patches mostly on arms), VERY pale skin, and most recently that put me in the hospital…… chest pain radiating down my arm and trouble breathing. I am constantly cold even on HOT days.
I recently went to see a cardiologist for the chest pain, trouble breathing and fatigue. They did a EKG, Echo Cardio, MUGA Scan, Nuclear Stress Test, and CBC. I was called 2 days later and told that I needed to go to the hospital to have a blood transfusion. I was diagnosed with having Aorta valve sclerosis and 2 leaky valves. I was told nothing needed to be done about this, but was told I needed to attend to my blood. My CBC revealed that my hematacrit was 19 and my hemoglobin was 5.2 and my RBC was 2.2 and WBC 1.7. I was admitted to the hospital after seeing a Hematologist/Oncologist that diagnosed me as having SEVIER Iron Deficiency Anemia. I was given 3.5 liters of blood and 75ML of Iron. (this was a month ago) I also had a CT scan done of my abdomen and chest to reveal “nodules” on my spleen and a “granuloma mass” in my right lung. This led to an ultrasound of my spleen and a PET Scan of my entire body. I was told today that those tests “looked benign”, but we would retest in 6 months to make sure nothing has changed. CBC today Hematacrit was 27(still low), Hemoglobin 7.8 (still low), WBC 3.1, RBC 4. I was told to continue iron therapy and I should get a B-12 shot once a month. That this was probably due from a “heavy menstrual cycle”…….C’MON……I STILL FEEL LIKE CRAP AND I JUST DON’T THINK THIS IS IRON DEFICIENT ANEMIA……….ANY HELP IS APPRECIATED!!!!!!!
THANKS!

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4 Replies:

  • Wow...I am so sorry to hear what you are going through. :( Since you have PCOD (as I'm sure you know), you are more prone to other autoimmune problems. Has anyone considered Sjogrens (this could explain the joint pain, spasms, dryness, and potentially some of your other symptoms)? Also, have you been tested for Celiacs? Celiacs is not tested frequently, but can cause severe gastrointestinal problems and malabsorption complications (especially iron and B12!). If your iron therapy does not help, definitely ask about getting tested for Celiacs. Best of luck!
    GD2005 61 Replies Flag this Response
  • Thank you for the response. I will see if I can be tested for these things. I had a doctor suggest that I may have a form of lupus because of some of the symptoms I have. How do they test for this?Thanks,:confused:
    tbrauer25 1 Replies Flag this Response
  • Thou Fibromyalgia is just diagnosed based on where you have pain, many different things go hand in hand with Fibromyalgia and one gets them along with the FM.. eg irritable bowel syndrome (which im sure you have by the sounds of it and you having fibro), migraines, increased tiredness.... A quarter of those with Fibromyalgia.. actually have Chronic Fatigue immunity dysfunction syndrome (CFIDS) (also called chronic fatigue syndrome) and by your larger range of symptoms that are outside of the normal FM things... im fairly sure this may be your issue. Ones with CFIDS have been found to have a low volume of blood in our bodies.. we may have up to 40%+ less blood in our bodies to start with than a normal person. So in this is the case, i guess it would be logical, if you get very heavy periods.. that you'd be more at risk for anemia. B12 shots are often recommended for CFIDS patients (helps some). Muscle spasms in feet, legs, hands, & arms muscle spasms are common in CFIDS .. along with things like restless leg syndrome (but it occurs in CFIDS in the arms and hands too). You could find that some medication for restless leg syndrome.. may help. For the irritable bowel syndrome (if you want this diagnoses confirmed..get your doctor to send you to gastro specialist or talk to your doctor about it). Increased fibre via fibre supplements is usually recommended.. it will help balance out what your bowel is doing and help stop it going from the diarheara to constipation and visa versa so much. Probotics are usually recommended too for this and can help. Certain things can trigger IBS symptoms.. eg your hormones, certain foods eg coffee, strong spices ... and any food intollerances you have. You may need to cut some things out of your diet.I had horrible alternating IBS (constation and diarrhea to the point of incontience) but now have it under control with all the above suggestions my gastro specialist gave me. I too think you have a problem with Sjogrens. This is often present with other illnesses (including CFIDS). I am constantly cold even on HOT days. That is something which happens with CFIDS. At times, Ive actually lost my ability to feel temp. properly due to that. There was a stinking hot day .. and I didnt even know it was hot so was wearing jumpers and big coat etc. A friend found me on her lawn, collapsed as i got too hot without even knowing I was hot cause i felt cold. (doctor has told me i may be at risk of hyperthermia at such times). chest pain and having trouble breathing.. can happen in CFIDS. I suggest you check out http://wwcoco.com/cfids/bernesx.html for a good list of CFIDS symptoms and the percentage of CFIDS patients who get them. Also go to www.immunesupport.com (largest online CFIDS as well as fibromyalgia site)... and read the info there about these illnesses so you can work out yourself which you think it actually is.. just FM or CFIDS (Dont rely on your doctor with all this stuff unless he's one who's used to seeing CFIDS patients.. most doctors know hardly a think about this illness. You really need to see a CFS specialist).
    taniaaust1 2267 Replies Flag this Response
  • I agree with the above poster, fibro can make you feel like you aredying. Dr Stamand uses guaifenesin and that has worked for me and all of his patients. The site has a forum board, and it is interesting reading the posts. I get my guai from immunesupport.http://www.fibromyalgiatreatment.com/
    Anonymous 42789 Replies Flag this Response
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